Sunday, Aug 23, 2009: Update and Prayer Requests
Thank you for your continued interest, love, and support. Your prayers and words of encouragement have made a huge difference in our lives!
We had an amazing trip to Disney World! We also went to Universal and Sea World. We then flew to Rochester where we had a wonderful time with family and friends. Ian fell in love with his aunts and uncles, cousins and close-enough-ins:) Uncle Andy and Aunt Mary had to be his favorites! He had an epic water war with Uncle Andy, Matt, and Jayden that he still talks about! After that we went to Nantucket to see Ian’s brother Mike. He went fishing on a boat and caught a huge fish with Mike. Ian also went swimming in the ocean for the first time. It was a great trip!
Our good news: Ian’s counts are back to normal. The doctors thought he would need another few weeks to recover from the effects of the radiation, but like everything else, Ian is defying expectations and the standard protocol for treatments. He really is a super hero:)
He will have his PET scan on Monday, tomorrow, at Children’s Hospital in Denver. I am hopeful that nothing will light up on this scan. Everything has indicated that Dr. Grabb removed the entire tumor before it spread, but there’s always the chance… Please keep the positive thoughts and prayers coming.
Because his counts are back to normal, he will start chemotherapy on Tuesday, Wednesday, and Thursday this week. It is a bitter-sweet event because he is healthy, but now we have to start the process of making him sick again:( My prayer is that he will be just as strong, if not stronger than he was during radiation therapy. Please join me by keeping that positive thought in your minds.
I was hoping that I could work with my students another week before I had to leave them for a few days, but that’s not going to happen. I did find an amazing sub who is willing to keep his schedule free for me, so my students won’t have a crazy year. I can now relax a little. His name is Joel Azrikan. I am thankful beyond words for his compassion and response to our situation. He is truly a God-send.
That’s it for now. I’ll let you know how things go next week.
Love and blessings,
Pauline and family
Thursday, Aug 27, 2009: First Round of Chemo
Ian’s chemo treatment was actually worse than I thought it was going to be. We were in the doctor’s office on Tuesday from 9 am until 5:45 pm. The first day of treatment will always be the longest, but Wednesday was from 9-4:45 and Thursday was from 9-3:30. We had to bring Ian home with a fluids backpack, which means he has been connected to an IV through his port since Tuesday. That has been so hard on Ian. He loves to run and jump and that is limiting his activity. He can’t even walk to the bathroom by himself. He will be accessed all through the week and weekend. It will be very difficult for him and to watch him go through this. To make matters worse, he threw up all night on Tuesday and a little on Wednesday. So far nothing tonight:)
As happy as we are that Ian’s PET scan came back clear, we are saddened by how sick this is making him already.
Please keep those prayers and positive thoughts coming our way for Ian’s strength and that these six months of chemo will clear his body of the cancer forever!
Love and Blessings,
Pauline and family
Tuesday, October 6, 2009: Update
Well, hey there!
Here comes another update from my end… Disclaimer: it’s heavy. I apologize in advance. It’s been a while since I’ve written, so I thought I’d give it a shot even though it’s difficult… We went on our Make A Wish trip back in August and it was absolutely fantastic. We got to see most of our extended family in Rochester, New York; I got to see my Dad in New Hampshire; and we all went to Nantucket to see our brother Mike. Then my step-dad, Carol Linn, and I drove back to Colorado with the car my Grandpa gave us for what I calculated was my tenth cross-country trip. It was a ridiculously packed vacation, but oh so worth it. Ian had a blast riding all the rides, meeting all the characters at Disney World, getting to know his cousins and second cousins, fishing with his older brother on Nantucket, and now we’ve been back for about 8 weeks.
Some new tragedies have taken place, as well. The day before I left for Disney World one of my dear friends Stephan passed away. The reason of his death is still not known. He went to sleep, and didn’t wake up in the morning. He just stopped living. It’s been extremely difficult processing when I wasn’t able to attend the funeral and mourn with friends that were also close to him. Also, my best friend Susan, her mom Leigh-Ann, also passed away a few weeks ago. After 5 years of fighting long and hard, Leigh Ann is now cancer free… the after-math of this has yet to set in. The depth of pain I feel for the Volberding’s and the Maloney’s goes beyond words, and most days it still doesn’t feel real.
Ian also started chemo in August, and the cycle goes 3 full days on, then he’s attached to an IV backpack for the rest of the week, then three weeks off, and then the cycle starts again. It’s brutal, and I don’t even have to deal with the brunt of it, like my parents, who really are incredible, steadfast, and strong. Basically the first week, he’s really sick, the second week he’s really tired and sometimes still sick, the third week he starts doing better, and then we start all over. He continually apologizes and asks if we’re mad at him because he vomits all the time, and we always respond with tears, and “of course not’s.” We don’t know how to explain the situation to him any better than we already have. He started to lose his hair during the first cycle so we shaved it to make it easier. He hated the baldness at first, but from the kind “you’re so handsome comments” people continue to shower on him, he’s getting used to it.
Thursday, Oct 22, 2009: Update
It’s hard to believe that six months have gone by since we found out about Ian’s tumor. We’ve begun discussing our lives in BC and AC (Before Cancer and After Cancer) time periods with April 28th as the dominant vertical event. My husband and I have some great memories and painful memories on the BC timeline, but none of them compare to the awakening we’ve had on the AC timeline. Our pain is deeper, but our joyful moments are more meaningful and important to us now.
Some painful moments over the last few months:
Carol Linn had Swine Flu in September. The only reason she was even tested was because of Ian’s cancer. We successfully kept that flu away from Ian, but not without sacrifice. I couldn’t hug or even get near Carol Linn at a time she needed me most. I felt like I was living Sophie’s Choice. How do I choose which child to be with? I chose Ian—the logical choice—but not the easy one. Even though it all worked out, and Carol Linn isn’t traumatized by it, it’s still painful for me to think about.
We lost a dear friend of the family. Leigh Ann Maloney, after fighting long and hard, lost her life to cancer. She was like a second mom to Nicole. Her death was a painful experience for all of us, but most significantly to Nicole.
We had to admit Ian into the hospital on October 2. He spiked a fever of 101.9 and it wouldn’t come down with Tylenol. His counts were so low that some of the numbers were just dashes. We stayed in Memorial Central the whole weekend while he received blood transfusions and antibiotics to help him fight off whatever infection had taken over his body. Neither Dave nor I slept much that weekend. Dave “slept” on a cot half his size and I “slept” with Ian. Ian grabbed my arm at night and wouldn’t let me go, fearing that I would leave him while he slept. Even though he wasn’t completely better, and his counts were still low, he was released on Sunday night.
Dave and I both went to work the next day, exhausted, but glad Ian’s fever subsided. That night, October 5th, Ian went into our bedroom (where he now sleeps because he can’t stand to be alone in his room anymore), turned around to turn on the light, tripped over his own feet (the chemo has made his body stiff), and fell on my armoire, hitting his head hard. He instantly started screaming. I rolled him over and watched as in horror-movie style his head and face started swelling and turning blue and purple as blood quickly gathered under his skin. His platelet count was only 46 (the low-end of normal is 150), which meant that any contusion was dangerous because his blood might not clot at that level. I have never been so scared in my whole life. I thought I was watching him internally bleed to death. I called Dave, 911, and Ian’s doctor. The fire department came quickly, then the paramedics, and not far behind, my husband (one small advantage to being a deputy). Rushing him to the ER was the general consensus. They did a CAT scan that showed the bleeding had stopped, thankfully. They released us at 2 am. We went home, slept fitfully again, and went to work again. Thankfully I have some of the best students I could ask for, and they were content with reading and working quietly at their desks. Dave brought Ian to his doctor on Tuesday, where he received a platelet transfusion to help his bruised and swollen skin heal.
Although all of those things are painful, one of the deepest wounds happens on a daily basis. Ian begs me not to go to work every day. He tells me, “Mom, you’re breaking my heart when you leave me.” And then I have to pull him off me and watch him cry as I shut the door, leaving him so I can take care of other people’s children. I love teaching, but it doesn’t feel like the right choice, albeit the necessary choice.
Not so much painful, but stressful moments:
Calling a Kaiser rep about the fact that our out-of-pocket expenses had exceeded the limit, only to find out that “out-of-pocket doesn’t mean out-of-pocket.” We were told we needed to read the fine print, discovering that co-pay and deductible payments are not the same thing; some things in Ian’s treatment are covered and apply to that out-of-pocket expense, and other things do not apply to it; we could be charged a million dollars in co-pay (out-of-pocket) and it won’t apply to our deductible or our medical bills. I discussed this with Kathy McRae and she took it to the benefits meeting. She was told to tell us that we should feel lucky that we don’t have to pay our specialist the full amount. I guess I don’t see what’s lucky about my son having to see a specialist at all.
It’s also been painful for me not to be able to go to Carol Linn’s volleyball games. I’m the mother that screams, “That’s my girl!” at all the games. Carol Linn hasn’t had someone claiming her at too many games this year. It makes me very sad.
The money the Liberty Mentors and Pine Creek Student Council raised for us and The National Brain Tumor Society. That money helped us pay bills, buy groceries, and put gas in our car…things that weren’t that hard to do before, but are painfully difficult now that our pockets are empty.
Staff members continue to think of Ian by sending him gifts through the mail or bringing them by my room. It fills him with such joy. Thank you so much for doing that.
We had wonderful meals prepared for us last month for lunch and dinner. We are also blessed to have my mom here this month, helping us with meals and the house.
Joel Azrikan, my sub, who continues to do an amazing job with my students.
My adopted daughters, Susan Maloney and Christine Watson, who are amazing people, fantastic babysitters at a moment’s notice, and know how to make this old lady feel young on her birthday.
Kasey Brewster who comes home for a weekend and asks if she can come to see Ian and play with him for a bit.
Hearing him tell me he loves me.
Watching him play with other children (those rare times that he can).
Watching him jump and run, even though he’s not as fluid as he used to be.
Buying Ian new clothes because he is growing out of his old ones.
Holding my husband’s hand through the good and the bad, knowing we are in this together.
My daughter Nicole who put her life on hold to be here for her brother.
Friends that check on my mental health daily.
Helping Carol Linn celebrate her 16th birthday.
This week we finished Ian’s 3rd chemo treatment. It seems like each treatment his nausea is worse, the side-effects increase. The good news is we are half way done. Only three more treatments to go.
Thank you for caring enough to read through until the end.
Thursday, Jan 28, 2010: Infusion Complete!
Ian’s chemotherapy is done! We are so relieved. Thank you for the prayers and support we’ve received the last 9 months.
Yesterday, Ian showed us his strength in an unbelievable way. First, we were introduced to a little girl around his age that had a brain tumor removed and a similar aggressive treatment. We were told back in July that Ian would be much like this little girl at the end of his treatment. She was stiff and could barely walk. She cried in pain at every step she took. We were told that Ian may need a wheel chair by the end of treatment to help him get around. I watched this little girl and her mother; my heart ached for them. Tears welled up as I thought about the pain her mother must be feeling for her child; mixed in with those sad tears were tears of thanksgiving that Ian did not have to experience the same side effects.
Then, a short while later, Ian was standing between two chairs while he was connected to his IV and receiving his last treatment. He placed his hands on the arms of the chairs and lifted himself up, swinging between them. Not only did he avoid the stiffness, but he remained strong through it all! His doctor thinks we should get a shirt that says “The Amazing Ian” because he cannot believe how he has handled it all:)
The next two weeks will be difficult ones. This is when his counts drop and he’s in the “danger zone.” He will have another transfusion or two and we’ll have to keep him isolated.
Then in March, he will have a full-body PET scan, followed by an MRI every three months for the next two years.
If his current condition is any indication of the future, then Ian has knocked out his opponent. Cancer will not see Round 2!
I still covet your prayers and positive thoughts.
Friday, April 30, 2010
So here I sit, at the end of April, again. I wrote a note almost exactly a year ago… thinking I was going to Africa… and instead ended up delaying my trip indefinitely on account of Ian. I recently re-read my updates from the last year and bawled my eyes out. I think I had blocked out much of the pain and scarring that’s happened. But it made me re-recognize how quickly life can change (.00001 seconds, if you were wondering), and not to become attached to plans and to constantly use the word “tentative” when referring to them.
Anyway, so much has happened in the last few months it’s unreal. Ian’s last chemo session was in January, and every MRI and scan since December has come back completely and 100% clear. Also, all the side effects that the doctors warned us about: loss of hearing, loss of energy, not being able to walk up and down stairs… none of them happened. He’s stronger than ever before, and after the hearing test they said his hearing got even better. His hair and eyebrows are coming in nicely, and I continue to find it unbelievably amazing that the best thing that could have happened… did. We’re all so thankful for the hopes, prayers, and love sent to us throughout this year. We’ve been humbled and strengthened by all of you, and our gratitude is never ceasing.